Grade 2 Lobular Breast Cancer Journey

I feel so fortunate that my cancer was caught early, that I thought I might share my cancer journey which although it has been hard and stressful at times , has been an example of exactly why we have breast screening and how amazing our NHS can be, and hopefully give some people starting out on their own similar journey some hope and positivity . 
 

I attended my first screening mammogram in February this year , never of course imagining I would be recalled . Two weeks later the recall letter dropped on the mat - " your mammogram was unclear , we need to do some further tests "  appointment was not for 12 days , and so my googling commenced !! I couldn't feel any lumps , had no changes to the skin or nipple , I went from it's nothing to this is cancer and it's spread already , aches and pains appeared , and seemed sinister , I could hardly eat  or sleep. I was an anxious wreck . 
 Breast clinic appointment followed - i was on my own due to Covid - it was very obvious right from the word go that they strongly suspected cancer - the staff were lovely but gently firm that I was to expect a cancer diagnosis- I was examined , mammogrammed and ultrasound biopsies were taken of an area 14mm in diameter . I left there numb and in shock - I drove myself home but I don't know how . 
 

I returned one week later for results , this time my partner could attend . I was told I had Stage 1(19mm) Grade 2 Lobular breast cancer , Er+ , her -ve .  Treatment would be a lumpectomy, sentinel node biopsy , then radiotherapy and tamoxifen . Chemo was also a possibility depending on sentinel node biopsy .  The diagnosis was delivered so sensitively by the consultant and nurse and strangely I came out feeling relieved as I felt it could have been so much worse - bizarre feeling to be relieved when you've been told you have cancer . 

4 weeks later in for day surgery , had a magseed placed a few days prior to surgery , so no need for a guide wire , and the radioactive trace was administered once I was under the anaesthetic, so no extra stress . The scar is about 1.5 inches long on a natural crease . They managed to remove lump and nodes through the same scar . Got home that night , I needed painkillers for a couple of days and wore a bra day and night for a couple of weeks but felt fine . 

Results were scheduled for 2weeks later , but I needed to clarify an appointment with my breast care nurse after about 8 days , and she told me my results were already in and were really positive . Tumour was only 14mm , clear margins and no spread to nodes - I felt and feel so unbelievably fortunate . 

I saw the oncologists and commenced on Tamoxifen- horrible night sweats but otherwise no side effects , and    have recently completed 5 days of Rafiotherapy - ( deep inspiratory breath hold technique - I was nervous but it was not too bad as the radiologists coached my through it ) 

I am tired , a bit red and swollen , a little sore , emotionally a bit battered and bruised but I really do feel so fortunate. My timeline from diagnosis to finishing radiotherapy was 13 weeks and 2 days -  which during COVID is really amazing . 

The instinct when you are in this situation is to google everything but it only stresses you out , Talking to others going through similar on forums is so helpful  . Believe in your team - - - they are doing the absolute best for you . 
 

Apologies for the length of this post - I hope it is even a tiny bit helpful to someone . 
 

XX 


 





 

 

 

  • Hello Scottielass, 

    Thank you so much for sharing the details of your breast cancer journey. It sounds like you were looked after really well every step of the way and I am so pleased that your results are so good. What a relief it must have been for you after everything you went through. 

    You are absolutely right about Google. It is easy to be tempted to google everything but this only results in additional unnecessary stress making you anticipate the worst when it's not really needed. Instead of googling frantically, you are right it does help to talk to others going through a similar situation on a forum like this one. 

    Your story will be an inspiration to many I am sure currently going through the same thing. 

    Best wishes, 

    Lucie, Cancer Chat Moderator

  • Thank you so so much for this.

    I am really worried at the moment.

    First mammogram in May,and recalled to BSU (an awful shock) , where after another mammogram and ultrasound was told needed biopsy of area of distorted tissue -a radial scar?- as it could be hiding lobular cancer.

    The vacuum needle biopsy hasn't found any cancer, but in the results appointment the consultant said she wanted another biopsy just in case. 

    Of course at first I just heard the 'no cancer was found' but now the worry and fear is beginning to rise again.

    I was told by the radiologist that something would have to be done about the radial scar anyway so assuming will have to have it removed?

    The biopsy isn't until the end of July so hoping that's a good sign?

    To be fair the consultant did say that if they did find something it would be very earky and treatable, so clinging on to that.

    Just so useful and positive to hear your story as it's the fear of the unknown that gets me-I've never been one for surprises!

    Obviously I am ghoulishly googling lobular cancer...I can't help it!

    I wish you all the very best and thank you so much again.

    X

     

  • Hi

    Your post has given me hope, I'm new to the journey, I to have Grade 2 Lobular BC HER neg, 12 days ago I had a masectomy, still got drain in, 4 tumours removed and some lymph nodes, biopsy was done but of nodes but no cancer found, I'm hoping it is just within the isolated area, not sure what my next course of treatment is atm, I know that I'm in safe hands, great consultant and breast care nurses, from date of diagnosis of 26th May its been very quick and im getting my head round it.

    Thank you for sharing your journey and wish you all the best x

  • Oh I know that feeling so well - I found that I clung onto what the consultant said until I started obsessively googling !!  But that's positive news that the first biopsies were negative for cancer - they are just not taking any risks which is good.  
    Your consultant has said that even if they did find something it would be early and treatable . They don't say it to make you feel better , they deal in facts . Try to focus on that , although I know how hard that is .  My husband kept reminding me of what my consultant said every time I had a meltdown which brought me back down to a more manageable level of stress .  
     

    I found Maggie's Centre to be absolutely fantastic for support through this whole process. I just called them and they called me back and talked me through it . 
     

    I will keep my fingers crossed for you 

     

    xx 

     

     

  • It is such an emotional rollercoaster - one that none of us ever want to get on !!

    That's great news that they haven't found any spread to your nodes - really positive . I found the breast care nurse to be a really good source of information and reassurance  , I spoke to her before my follow up appointment with the consultant to see if she had more information on what to expect so maybe give yours a call . 

    I also asked loads of questions both with the consultant , and breast care nurse and then the oncologists . I had a notebook and just wrote down questions when they popped into my head . I also wrote down their answers - just to make sure I understood it all . 

    My consultant patiently answered my 3 A5 pages of questions !!  
     

    I hope you get a plan in place with your team soon - it will help you so much once you know what to expect treatment wise. 
     

    Wishing you well with your recovery , please feel free to message me if I can help in any way . 
     

    Xx 

     



     

     

  • Thank you so much for your reply.

    What you said about the consultant dealing in facts has helped so much. They can never tell you  everything is going to be fine so when they do say something positive they must mean it!

    Even if it does turn out to be something, reading the process you've been through has really helped me, just getting a really honest step-by-step account...

    Thanks again and obviously sending you the very best wishes for a wonderful healthy summer and beyond...

    X